MAY 2014 – Newsletter 10

Adapted from ‘189 days to say goodbye’.

Written for the ‘others’ and for all the people with patience.

OLYMPUS DIGITAL CAMERASitting frightened how words, thoughts, or feelings will be interpreted, it is true fear can paralyse everything. It sweeps you up and holds you in a place where there is nothing left to think, to do, to say. It is a place where motivation itself is swept away as events stun you into submission. Once you start back from that dark place, only slowly are you able to reengage in some of the things that existed before. In fact, you NEED to do these things as they are part of your own normality, stolen from you by events. Deeply buried within that same place lies inertia and motivation but the greatest stumbling block for me will always be lack of reason.

To understand that point all you have to do is merely accept that, for me, there has to be a reason to write. As with many other people no doubt, this ‘reason’, or lack of it, can stop everything from functioning on its own. It is far beyond writer’s block, as to be blocked you have to be thinking about it, which I haven’t been in any shape or form. And so it is true I could find no ‘reason’ at all to write over the last eight months for there was no ‘purpose’ to the writing. Thus, I had nothing to say.

Over these silent times approaches did come asking me to write this or that, about this or that, but when you have lost your1399678_547589131995365_589568704_o will to write your brain no longer functions. To be perfectly honest, you just can’t be bothered as nothing will make a difference, nothing ever will at that time. Until you can find a way through the maze you’re lost in nothing at all matters, not day, nor night, not hunger nor sleep. Whatever the truth of the do’s or the don’ts, motivations or reasons, a single recent request triggered this stream of thoughts, my first since October 2013. Clatterbridge Hospital Cancer Centre was to hold a conference around additional needs and cancer treatment. Thus there was a spark, a reason to write which didn’t exist before. And the gates opened when I said yes.

With that request aimed squarely at me, I will admit to feeling like I’d been asked to walk barefooted on hot coals while stabbing myself in public with sharp blades, like drawing a Stanley blade across your body repeatedly with each thought, each memory you would have to look at. Eventually finding myself  being introduced while staring up at the tiered rows of filled seats, here it was I was to rake over those burning coals deliberately, slowly, piece by piece, and then walk on them; reliving so much previously avoided as banks of eyes watched. In a packed lecture hall sat consultants and nurses, radiographers and Macmillan staff, academics, site staff and all shades of provision.  Here I was to relive things I didn’t want to recall in order to illuminate, educate, and inform.

DCIM107DRIFTLooking up individual faces appeared, remembered from where they existed in the unfolding tragedy of the original script. As their recognition struck me standing there, caught like a deer in the brightest headlight, for the briefest of times I was no longer alone. Once again I was sitting beside a broken down Bertha as in a previous update, just as clear as day I felt the rain that fell. In the blink of an eye I became the person I once was, who did things like this in a previous life. For the longest briefest time, I was me again.

When the aftershocks of the talk did appear, as I knew they surely would, they were profound as I sat on a ticking over Bertha and just about to leave the hospital; like an earthquake striking inside my helmet, they obliterated me before their strength. But as with everything else you hope some small difference can be made with the telling of a story, for the other people still to come in the future.

For you see, such things and reasons are still the founding truth of what we set out to do so long ago – to tell a different story involving two million people – much as I did for one person at Clatterbridge Hospital on that recent day. I told the story of a single blind person, the story of Cathy and her four years of treatment. I told of the good things such as they were, and the bad things which still weigh heavily on me each and every day. I suppose it will always be this way as I am still trying to adjust the weight of those days. Trauma makes this true. Such things take their own time to work through as you continuously shift and move the weight of those memories around in your head.

Thus this update is a continuation of such a theme involving the road travelled not just by me, but by so many others; people who are wrestling with themselves. Perhaps these words may help somebody somewhere. They might not. They may help me. They might not. No longer is anything certain in the way it once was. It is what it is.

DCIM107DRIFTFrom a personal point of view, even as I write this, I still wonder if it really gives value to ought in the end? Does it help? Can it ever? But then people contact me (as with Clatterbridge afterwards) to tell me otherwise. When the treacle of my mind clears enough to be bothered to stare at either a blank page, or to tell of what once was, I still can’t help but wonder in this way. People tell me it helps them appreciate and understand aspects of what was once done by two people, or by Cathy herself with her treatment. People follow the winding path of the person that was left behind in the aftermath of the hurricane. Me.

I increasingly ponder nowadays about living and describing life backwards, forever caught up in the past, or of trying to describe life in the here and now without people wanting to go and jump off the nearest cliff. Both are fraught with potential misunderstandings as I wrestle with this endless approach/avoidance conflict I go through about such things. I say this as the world of cynicism is so deeply embedded in our depersonalised modern life that, sometimes sadly, it is true how people only see what they expect or want to see. And sometimes it is not in the same way that Cathy and I both viewed the world, with openness, awe, excitement, and gratitude for the life we shared together.

In this constant writing in journals the content always consists of both of these two things intermingling easily (past and present). In Touching the World there was this weaving together of so many different aspects of past and present; telling of P9298334our lives within the context of a journey.  Everyday still sees me recording something new, or something old. Pages of random thoughts become mini stories about one thing or another, things I’m thinking of, things I’m seeing, filling pages and volumes on the shelf above where I sit writing this. And that is where they sit, mere scribbles filling time.

They contain lives lived and lives ended through enforced transitions; never sought, never willingly engaged in but only occurring through sequences of random events involving change. And when the mist and inertia clears to some degree they become things such as this update. Each one of the past has had distinct themes if you look for them. Sometimes they are obvious, sometimes they are not. Sometimes the themes exist in plain sight whilst in others they live in the spaces between the lines. But they are always there; layers within layers involving questions within questions.

OLYMPUS DIGITAL CAMERAOften events in those journals are written around a road somewhere, an experience, or a person bumped into across the 20,000 miles since last June. Recent ones may signal the beginning of something, or nothing at all as I haven’t yet decided. Only time will tell in that matter. The best known scribbles became focussed into something people told me could never be done. They told me how some would not understand, would never understand, would never appreciate or even contemplate finding this understanding by the turning of a page. Yet it came to fruition when those same joint recollections became something more.

Now pages are again filled with stories in my own unending business of going nowhere on this different ‘journey’ as medical people tend to so euphemistically call it. My own road from there to here. From then to now.

At times these scribbled words help to clear my head, to find a way through the confusion. Sometimes however, all they manage to do is create even more as I never know where I’m truly going on the page. It’s like writing a book without knowing the end as only time will give that to you. Sometimes I have no idea even where the next line, let alone page, will take me. In the here and now all that can be suffered are varying degrees of uncertainty until things become clearer through words spilling out. Through them there is a hope of finding clarity somewhere along the line we call life.

In these handwritten scribbles I always seem to return to the question why I bother at all before settling on the oft quoted ‘writers write because they have to write’. Perhaps it is true, perhaps it is not. In reality I can no longer tell much about anything at all on some days. Spinning off into all those other potential realities I can only sit and wait. For something. It has become wrapped up in the daily breadcrumb trail now called ‘my life’. But at least there are these breadcrumbs apparent, rather than the famine that once existed.

P7058021Sometimes reams of words are triggered by an email announcing its arrival from somebody who, somewhere in the world, read a book about two people I once knew. They still arrive frequently, unexpectedly, and they still begin ‘Dear Cathy and Bernard………’

Sometimes that single opening can stun me into deep silence for days on end before I can go on to read the next lines. Hammering through the memories such a line brings about, cascading images fast forward, ripping through me until I slam into the wall at the end, never be avoided, no matter how hard I try. It still finds me collapsed in a bloodless heap with the impact. Over and over again it occurs. At times I can only stare up from the psychological floor as varying lengths of time have to pass without intrusion. And you never know the strength of that impact until it happens. With no warning, no signals, no precursors running a big red flag up saying ‘danger, psychological/emotional collapse imminent ‘.

Down you go.

Then you drag yourself up.

You have to.

She told you.

You have to.

Eventually responses are composed to each and every one as a promise was extracted, a promise made, how such things P9258309would always happen. Taking their own toll, each word is measured and weighed for the totality of their impact; on a stranger who took the time to say hello. Further time passes before the inevitable return wings its way back containing an altered salutation, now beginning ‘Dear Bernard……’ And then I can only sit and wonder who this Bernard person is, will be, can be. But at least I’m thinking. For the longest time even that was not possible.

I still do see things where they do not exist but also fail to see what does, whether real or phantom problems, whether real or phantom solutions to the same problems that may merely exist within my own head. It’s the way I am. I see borders where none exist, lines of demarcation involving cliff edges off which to stumble and fall.  The wood or the trees? The trees or the wood? No longer am I attached to my safety rope, but now float freely with no anchor, no sense of………. anything really beyond drifting on the wind. Following the breadcrumbs, wherever they may lead, in a movement of a sort where none at all once existed.

Once labelled ‘a seeing blind person’ this still reflects every room I walk into, whether new or old; identifying, cataloguing, thinking, in the way of old habits dying hard, like the descriptions no longer needed but which still constantly sound in my head. The term sums up the metaphor of life on two sides of the same coin, involving certainty, something more concrete, more sure; my own knowledge and understanding of a previous existence. On one side of the coin still sits blindness and all that it entailed. Now however I turn over my metaphorical coin to show the other side. My side. On that is portrayed other knowledge, of bereavement and grief in all its glory and personal destruction; the deep seated, deep rooted, rip you in half kind. Now I reside within these two opposing aspects of a personality fractured by events that is still trying to find its way home. But at least BT000489movement is sensed, such as it is.

A seeing blind person.

The term has a ring to it, a sense of belonging, a sense of familiarity as this is how I often feel. Never did I think that years after a person once called me thus, how my professional life would sum up the here and now. For truly I am blind now in ways beyond understanding, ways beyond comprehension.

Yet here I am.

But not.

Sight but still without understanding.

P7057994Living in a drifting, rolling grey cloud, the same as was so aptly described to me long ago in the before times of another life, on another page, in another journal, in another existence. For have you ever wondered what it is to be truly alone in this swirling mental darkness?

Perhaps being alone is a state you have longed for at some point in your life? In this I can only think you would mean the physical sense of ‘being alone’ which is so easily achieved, reached by climbing some hill or mountain somewhere to make you ‘alone’. No. I mean go beyond, far, far beyond that state. To be truly alone.

In this place you see people, are with them, but somehow manage to remain separated so that no matter how many there are around you, no matter that they sit within an easy arm’s reach, you’re alone. To be so alone it doesn’t matter if you are physically with them or not. In that mental space where we all live there are no discernible differences between the two worlds that you can latch onto, to anchor you into something more. Yet still those people reach out for you. They display such patience as they know things take time. And they give you that time freely, for no matter how long it seems to take. And you are grateful for it, this patience, this space.

OLYMPUS DIGITAL CAMERAI suppose that is where the expression ‘being alone in a crowded room’ comes from as it really is a long way beyond true. Truly you can be surrounded by people, or sitting on your own, and yet there is no difference between the two in the mental space where you live. Then you know. You come to understand. You are alone. Then sometimes you are not. Then you are. Then you are not. Subtle changes occur over time which you can now see whereas before they did not even exist. Changes. Adapting.

It is with this realisation you also come to understand that it once no longer mattered whether it was day or night, raining or sunny, whether you had eaten or not and, at its very worst, even if you lived or died. Perhaps this final point sounds melodramatic, scary, unsettling or worrying, as all of these words meanings may spring to mind from the reader’s mental dictionary. But they should not convey such things, such apprehensions, even though they are most certainly true. It is just is the way it is for some people as they, these survivors, grind through time. It is the way it can feel when you have travelled past such concerns, past such worries, such needs. Now it …… just is. When being alone for those days, weeks, and months opened you up in ways never before conceived.

P7068073 - Version 2Throughout that time a personality is boiled down to its core, going beyond thinking into a world of introspection, analysis, and reflection. It occurs on a different level than anything you could ever have considered or anticipated. It is something akin to being on an unending road trip in a country where you do not speak the same language as those around you. All that is left is time inside your own head. And it is while on that journey you understand that it no longer matters if you speak to others or not, as a salve for the loneliness and pain cannot be found. For your words and theirs do not understand each other. Yes, the sounds are there. Yes, the words are there. But it is like a Russian hearing Hindi, or an American listening to Norwegian.  At this point, truly you have gone past where nothing matters as ‘it’ has seeped into your very being, unbidden, uncalled for, and unwanted, but it is there all the same. You see everyone around is speaking Swahili, apart from you. Yet they still reach out to you. Patiently.

Consuming, submerging you to a point where you no longer know who you are, the part of you that initially broke fractures even further under the weight of this introspection as you live alone inside your helmet. In that place you pull apart everything you thought you knew, everything you thought you understood. Further parts of you shatter apart under the assault, splintering into component units comprising memories, pain, anger, guilt, betrayal, loss, truths, misery, fictions, beliefs, and all that you were until all that is left is pain. It assaults your waking and dreaming as you become lost within those pieces for a long time as the miles go past. Within there you reside somewhere amongst nothing but the wind and mental noise.

P7088142As you listen to all that noise it frightens you as feel you cannot, and never will be able to, find your way back. For your compass is truly broken, crushed and annihilated beyond repair, destroyed on the whims of fate. But neither can you go forward as you do not know which way that is either. It is as if you are staring into the shards of a broken mirror showing fragments of this, and that, reflected back to you from the floor onto which it fell and shattered. From that place no single, complete, coherent picture is shown.

Instead each piece is like a broken jig-saw people tell you will be reassembled at some point to reveal something, someone. Perhaps, if you are lucky, you will recognise aspects of the eventual picture. It is an image projected from some point in the future and it is an image everybody assures you will exist as they tell you about it. You know intuitively the picture will be you, but never that person you knew so well, that once breathed, for they have gone. And you can never be that person you once were as a fundamental part of you is also gone. Never to see. Never to hold. Never to return. Thus you sit changed, rearranged, disassembled, while being reassembled through the drifting of time in a new, frightening, unknown way. Ultimately you have been deconstructed in a way like never before.

In the reassembly itself, there has been no instruction manual, no workshop printed page to look up, no index of problems and solutions for given hard times on given days. So all you can do in the best way you know how is to glue back the pieces of what once existed. Slowly. So slowly. Carefully. So carefully. With uncertainty surrounding each piece, each join, each very movement is nearly paralysed by indecision. Sometimes there is a flash of recognition, a way forward, a decision, and you reach for it like a person starving for certainty. Gratefully you grab hold of it. And it feels good. But then it slips away like mist between your fingers. One step forward, two steps back. But. The step forward happened. And it will again. Patience.

All you have to do is believe.

Even as you do reassemble you know that there are, and always will be, pieces missing no matter what you do. No matter how hard you try to hold on to what once was, it will always be like that mist between your fingers. And within all thisOLYMPUS DIGITAL CAMERA gluing, sticking, welding, folding, people wonder how long it will be before you return to the person you once were. But you already know the answer to that question but you can never tell it as people will not understand until they too have listened to that mental noise. So you look to the floor where the shards of the mirror only you can see fell, knowing only you can hear that silent answer.

For the person that once was, now only exists in the mirror of your dreams.

For it is only there where all the unbroken pieces now exist.




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12 Responses to MAY 2014 – Newsletter 10

  1. Sharon Johnson May 8, 2014 at 6:34 pm #

    Beautiful writing.

    • Bernard Smith February 25, 2015 at 3:30 pm #

      Thank you Sharon.

      It’s true and honest and the only way I can write.

      Best wishes from me.

  2. Ginamarie August 23, 2014 at 4:17 pm #

    I love the analogy about the compass and the mirror. Many people has been asking me if I have map all laid out for my trip next year and I tell them that I don’t. They look at me in shock and I tell them that the bike and my heart will be my compass to find the road less traveled.

    • Bernard Smith February 25, 2015 at 3:31 pm #

      It is the best description I could summon up for all the people who do know or would want to know and understand about such things 🙁

  3. B August 3, 2015 at 2:35 pm #

    Grief observed. Beautifully.
    Best wishes to you Bernard.

  4. B August 3, 2015 at 2:47 pm #

    Great photos too

  5. Bernard Smith August 3, 2015 at 3:16 pm #

    Thank you.

  6. B August 4, 2015 at 2:26 pm #

    The photos are superb too.

  7. Sue Birch August 18, 2015 at 11:13 pm #

    I can relate to your lovely words, last year there was ‘us’ our bikes and our life, now there’s ‘me’ my bike and my life. Keep riding????

  8. Bernard Smith August 19, 2015 at 6:49 am #

    Ahhh Sue – as my t-shirt reads ‘Sometimes I ride to forget’. You see for me the riding is the only thing that still makes sense, it’s something I understand and know. In many ways the movement is because I don’t know what else to do. Perhaps in time I will. Perhaps in time you will. Best wishes.

  9. Mary the Badger May 26, 2016 at 1:14 pm #

    Dropped by on a Google search for something else lol. I am legally blind myself, and so related to your warm sad but story. We are only limited by the limits we ourselves set because the adventure never ends. God bless!

    • Bernard Smith March 6, 2017 at 9:43 pm #

      And that Mary is nothing but the truth. Cathy sailed, tandem sky dived, climbed, ran, howled with laughter, and circled the world.

      All you need to do is believe and have the right assistance. Best wishes. Bernard.

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